To do Nissen surgery or not....that is the question?!

Hello all!  I'm so excited to have finally found a forum that seems to have a lot of members with the experiences I'm having.  Hopefully not all of the scary experiences on the surgery I've read about either!

I'll give you a little bit of past history.  I've dealt with upset stomach / nausea most of life.  When I was younger they had me cut out caffeine which helped....then as I got older they moved to Nexium, endoscopy showed some irritation of my esophagus but not much......a couple more years and I had my gallbladder removed......up to today where I'm on Dexilant and still feeling a little naseau but definitely feel it if I miss the Dexilant for the day.  In the meantime, I began having bronchitis several years ago and over the years I would get more and more episodes of it.  I finally went to see a pulmonologist a few years ago and he began running a battery of tests.  I am currently on Advair 500 2x a day and Singulair for that.  I'm supposed to take Albuterol if wheezing but honestly, I was so used to the wheezing, I didn't even know that what I was doing when I breathe was not normal!  If I breathe out hard then you hear a wheeze....if I go to the dr. they always hear wheezing...and most of the time I end up with bronchitis a few times a year, last year it was almost every month but it has been better this year.  At the beginning of this year we did a bronchoscopy which showed nothing really, I've had allergy tests which didn't show enough to be causing this issue, and a few other tests.  My pulmonologist finally recommended me to a gastro dr. earlier this year b/c he said it was all he could think of that could be causing my asthma medicine to not control my asthma.  I met with them, had the endoscopy...same result, some reflux, and I also had the 24 hour ph test (miserable by the way :) )  Anyway, it showed I definitely had reflux quite a bit.  The first one put me on Dexilant but that hadn't helped so I went to a second one, he recommended surgery.  Fast forward to today and I'm questioning surgery. 

I met with the surgeon yesterday, a very highly recommended surgeon, and he did think it would help me but couldn't guarantee it.  I also know all of the scarey side affects I've read which freak me out.  I asked if losing weight would help, he DID NOT mention himself.  He said it could and I could try it if I want.  Honestly though, I'm not that overweight, like 10 lbs would put me under the 25 bmi so I'm really not that heavy and frankly I don't want to diet the rest of my life....plus I don't think that will do it anyway b/c I was sick when I was thinner too, only nausea wasn't as bad. 

I'm just having trouble deciding if the side affects / recovery are worth it if there's a chance it won't fix anything anyway?!  I don't have any episodes of chest burning, VERY few episodes of tasting the reflux in my throat.  Mine is all nausea and the asthma issues.

I would love it if anyone has some ideas, I know you're not doctors but experience means a lot to me!

Welcome to the forum! We've had a lot of questions about the Nissen in the past week. I recommend reading back through past recent threads with Nissen in the title. They are full of all kinds of information.

As with any surgery, there is a chance (very small) of side effects, complications or even failures. Those that do have complications tend to share their experiences online more often, so you can definitely get a very skewed idea of the success rate. Luckily, you will find many stories here of success with the Nissen. If you are properly screened and your surgeon is experienced, chances of success are very high.

I had my Nissen in November of 2011, and it gave me a new lease on life. I'm 32 myself, so I had the same feeling that I have a lot of years ahead. The Nissen was a huge success, and because of that I get to enjoy each and every one of those years, pain free.

One of our members, Denise (Dencha), had a Nissen for her asthma symptoms. She was very happy with the results. She also wrote an excellent journal of her recovery that I probably read a dozen times during my own recovery. I recommend you look it over. I don't have the link handy, but she may be able to provide it.

If you have any questions about the procedure or recovery, just let us know. We've been through it all, and would be happy to answer anything.

Thank you both for your responses.... I definitely want to hear the good and the bad.  Baza - do you mind me asking what issues you've had and how long ago it was done?  My GP is actually advising me to do it.

Hi asthmareflux,

I had a similar situation to yours, however my lungs were far worse than yours are now.  That was a progressive deterioration over probably 5 years.  At one point in that progression, I'm sure I was like you, but things just went downhill as time went on.

My lungs were very unhealthy, and my PCP pushed very hard for surgery.  My GI doc dragged his feet for 5 years while my asthma doc and PCP tried to keep me breathing. GI doctors don't really understand how a very little amount of reflux can affect lung health.

500mcg Advair is a very high dose.  Before my surgery, I was on 240mcg 4 puffs twice a day (along with Serevent and Singular) and my lungs were so bad that I was taking nebulizer treatments with Xopenex (like Albuterol) several times a day.

Post surgery, I am on 115/21 Advair, 2 puffs twice a day, and my lungs are great.  I do have allergies and asthma unrelated to reflux.  Before my surgery, my doctors couldn't control my asthma even with prednosone, inhaled steroids, etc...I was on such high doses of steroids that I now have permanent problems (thin skin that tears and bruises extremely easily).  I just wish I'd had the courage to push my GI doc to refer me to a surgeon much earlier.  I could have avoided so much illness and discomfort, and I could bump into something without requiring steri strips and bandaids.  My skin has no protective ability.

Nobody can promise that surgery will solve your problems.  Noone promised me, either. That's why my GI doc was so hesitant to send me to a surgeon.  He was afraid I'd have the surgery without any improvement to my lungs.  My PCP and asthma doctors disagreed. They wanted me to have the surgery.  Many tests and many years, along with many letters from my PCP, finally led to my GI doc offering a surgical consult.

I know that there are no guarantees.  I know I many at some point need a redo surgery.  Still, for some of us, there is no choice.  It's a risk we must take.  I, for one, am glad I took the risk.  The reward has been great.  I just wish I hadn't waited so long.

Good luck with your decision!

Denise

Here is the link to my early recovery journal:

https://www.healingwell.com/community/default.aspx?f=45&m=2183443

Hi asthmareflux,

At some point, when your lungs are affected by reflux, the surgery is the only answer.  Believe me, my PCP and asthma doctors were tearing their hair out trying to keep me breathing. I coughed constantly. I remember my daughter in law, who is a PA kept telling me that I had to do something...that I shouldn't be coughing that much.  My lungs were making tons of mucous, and it had to be coughed out.  It was not good. 

At one point, when I got gastritis from an antibiotic, my reflux got so bad that I was hospitalized for a week, on IV steroids.  This, when I was on top dose PPI and top dose inhaled steroids.  Even prednosone didn't do a bit of good.

My PCP told me that my situation was life-threatening, and refered me to a thorasic surgeon himself.  The surgeon did tests and on the recommendation of my PCP, whom he respected, said I was a good candidate for surgery.

I took the test results back to my GI doc, and he did the PH monitor again.  My reflux levels were a little higher (mind you, my reflux was never horrible...but it doesn't take much to get lungs going).  He told me I could continue treating the reflux with medication (which wasn't working) or he could refer me to a surgery, which he did.

I agree with your doctor who said that nobody can guarantee anything.  The reason they've ruled out all those other things with testing is to narrow down the probability that it's reflux that is causing your problems.  With me, it wasn't that easy.  I do have asthma and allergies, which definitely muddied the waters.

My surgeon told me that "If the lung issues were caused by reflux, the surgery [would] help me.  That, of course was the big "IF" that kept the GI doc from refering me.  However, I was at the end of my rope.  I couldn't continue the way I was.

I understand your desire to choose the best time to be recovering after surgery.  Mine was toward the end of February, which is a good time..after the holidays, but before summer!

Good luck with your decision!

This is a great place to be as you make that decision.  There are lots of post-Nissen members who can help you work thorugh things.

Take care,

Denise